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Virtual communities

What are the advantages and disadvantages of virtual communities?

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about Health: Current Issues Companies, 2004
Issues and Perspectives,

Part Three
k
SOCIAL
AND
CULTURAL
ISSUES
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CHAPTER 7
Social Support
Struggling to be strong after the death of his young daughter, Alonzo is
hurt and mystified when friends’ first question is, “How is your wife?”

Margie misses the normal times, when people talked to her about the
weather, boys, and school. Now they just hold doors for her and try not to
stare at her wheelchair.

Everyone knows Drew’s illness is very serious, but no one speaks of it to
him. Drew wonders how he is supposed to cope with such an emotional
topic in silence.

Lucy spends two hours each morning and three hours each evening
caring for her three children and her elderly mother. In between, Lucy
maintains a full-time job outside the home. She is glad she can help, but she
wonders how many years it will be before she can take a vacation or spend a
quiet day alone. Such thoughts make her feel sad and guilty.

Mario is pleased with life and himself. Things have not been easy, but
he appreciates the pleasures of life like never before. Friends and loved ones
are closer and he is at peace with himself. He marvels that dying has
brought about some of the best days of his life.

A
A
s these scenarios suggest, the majority of communication about health does
not occur in a doctor’s office or hospital. It occurs at home, at the grocery
store, on the telephone, and in other settings of everyday life. Spouses, children,
friends, and co-workers often have as much influence as doctors and nurses.

Social support includes a broad range of activities, from comforting a
friend after a romantic disappointment, to listening while a grieving father
tells and retells his story, to performing an Internet data search, to acknowledging
that a handicapped individual is a normal person.

Most people perform more supportive behaviors than they realize, and as
a consequence, have positive effects on people’s health and moods. Research
shows that supportive communication can help speed healing, reduce symptoms
and stress, lessen pain, and build self-esteem (Cohen & Wills, 1985; Metts
& Manns, 1996). And the benefits go both ways. People who provide social
support often feel an increased sense of worth and personal strength themselves
(Ferguson, 1997).
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174 Part Three. Social and Cultural Issues

This chapter is divided into three sections. The first provides a conceptual
overview of coping and social support. The middle sections examine social
support in two contexts—lay caregiving and death and dying experiences. The
final section cautions that, although social support is invaluable, inappropriate
or excessive amounts of it can be counterproductive.

¦
CONCEPTUAL OVERVIEW
In the simplest sense, social support is people helping people. Melanie Barnes
and Steve Duck (1994) define social support as “behaviors that, whether directly
or indirectly, communicate to an individual that she or he is valued and
cared for by others” (p. 176). Some theorists (i.e., Albrecht & Adelman, 1987)
consider that the central function of social support is increasing a person’s
sense of control. Their viewpoint is substantiated by research (covered in this
chapter) that people cope best when they feel well informed and actively involved.
This section describes different coping mechanisms and the role social
support plays in helping people through crisis situations.

Coping

To understand social support, it is useful to begin with the phenomenon of
coping. As Sandra Metts and Heather Manns (1996) define it, coping is “the
process of managing stressful situations” (p. 356).

Everyone is affected by stressful situations, which range from everyday
hassles to life-threatening occurrences. There is some evidence that people’s
everyday coping skills are more important to their moods and their health
than the way they cope with major crises (Burleson, 1994).

Coping usually involves two efforts: changing what can be changed (problem
solving) and adapting to what cannot be changed (emotional adjustment)
(Tardy, 1994). Of course, it is not always easy to know when to problem
solve and when to adjust. The options vary according to the people and the
circumstances involved. Often, coping strategies depend on how much control
people believe they have over their situation.

When people believe they can manage their health successfully, they are
said to have health self-efficacy (Bandura, 1986). Efficacy is derived from
the Latin term for “change-producing.” People with high self-efficacy are more
likely than others to maintain healthy lifestyles. A sense of self-efficacy may be
fostered by positive experiences in the past, encouragement from others, and a
cultural belief that people control their own destinies. This is called an internal
locus of control. Locus of control is more general than health self-efficacy, although
the two are often related. Many North Americans have an internal locus
of control. As a result, they are change oriented and hard working, but they may
be frustrated by failure and may feel baffled and betrayed when things do not
work out as they had planned (Marks, 1998). People who believe they control

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their own fate may be reluctant to ask for help and may believe they are responsible
for what happens—both good and bad. Faced with ill health, they
might ask, “What did I do to cause this?” Even assured that no one is to blame,
these people may feel guilty and ineffectual.

By contrast, people who do not believe they can change their health for
the better have low health self-efficacy. This is common in cultures in which
people believe events are controlled mostly by outside forces. This is called an
external locus of control. Because of their belief in fate, these people are
sometimes characterized as fatalistic. They are likely to regard events as God’s
will or the natural order of things. People with low health self-efficacy may
not be motivated to take personal action regarding health matters. For example,
even if they are aware of healthy dietary recommendations, they may not
change their diet because they do not feel they have control over their health
(Rimal, 2000). In fatalistic cultures people may reason: “It makes no sense to
change my lifestyle. I will die when it’s my time, no sooner or later,” or “I’m
sick because God willed it. Therefore, it is not right to seek a medical cure.”
As you might expect, adolescents with an external locus of control are more
apt to “follow the crowd” and smoke if their friends do (Booth-Butterfield,
Anderson, & Booth-Butterfield, 2000).

Coping strategies may be affected by cultural beliefs and perceptions of
self-efficacy. People with high self-efficacy are typically problem solvers, highly
motivated to protect their own health. However, they may be at a loss when illness
reduces their sense of control. In some situations people are powerless to
change their health status or to repay their caregivers’ kindness (Metts &
Manns, 1996). This may be especially demoralizing for people who have always
believed they could control their health. In these situations, a belief in
fate may help people accept what they cannot change. All in all, effective coping
seems to combine elements of both problem solving and acceptance.

Crisis

A crisis is an occurrence that exceeds a person’s normal coping ability. The
first sign of crisis is usually a sense that events are out of control. This may
give rise to panic or denial. For example, the parent of a seriously ill child remembers:
“I didn’t want to talk about it because it was something I wanted
to shut in the back of my mind and have go away” (Chesler & Barbarin,
1984, p. 123).

People in crisis are also likely to feel that things have changed, perhaps forever.
During difficult times, people often yearn for the simple routines that
characterized everyday life (Wartik, 1996). It may seem that life can never be
that way again. Following a death, grieving loved ones may wonder how they
will ever resume daily activities when they feel so sad and disconnected to the
things that used to seem normal. It is common for people in intense grief to
momentarily forget how to perform simple routines such as using an automated
teller machine or driving from one place to another (Wartik, 1996).
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A major crisis may serve as a turning point or dividing line. People affected
by serious illnesses often feel their life has two parts, before the diagnosis and
after it (Buckman, Lipkin, Sourkes, Toole, & Talarico, 1997). Circumstances are
so radically altered that nothing seems the same. The change is not always negative.
People who learn to cope with terminal illnesses or near-death experiences
sometimes say they are happier than before, appreciating pleasures they
used to disregard (McCormick & Conley, 1995). A cancer survivor interviewed
by Anderson and Geist Martin (2003) reflects on the strength and courage she
has discovered while undergoing surgery and radiation treatments:

I wear my scar as a badge of courage but I’ve never thought of myself as a

courageous person. But I am, I am a courageous person. People notice the

scar. But you know I don’t mind the scar. Years ago, I decided that I wanted

to change my name, to pick out who I wanted to be. Ivy came to mind be
cause I liked the plant. It’s a vine, it is strong, you can cut it down and it

comes back. There’s a lot of strength in Ivy. (p. 138)

Normalcy

A sense of crisis does not usually abate until it seems that life is normal again.
Normalcy is essentially the sense that things are comfortable, predictable, and
familiar. Being normal is not always as easy as it sounds. It requires the cooperation
of other people, even strangers (Barnes & Duck, 1994). Consider the
plight of individuals with physical disabilities. Often, their toughest challenge is
not learning to use wheelchairs or other appliances. Their toughest challenge is
resuming a sense of life as usual. Without this, they are trapped in a crisislike
state, excluded from the comfortable give and take of everyday transactions
with people (Braithwaite, 1996). Persons with disabilities may be inundated
with people willing to help them, but very few who engage them in casual conversation
or friendly debates over politics or sports. When people behave as if
individuals with disabilities are unlike other people (even by being unusually
kind or helpful toward them), they perpetuate a sense of crisis and alienation
(Braithwaite, 1996).

While doing research about support groups, I once heard a young woman
who had recently become blind say she longed to do favors for friends again.
As she put it: “You appreciate people’s help, but it’s not the way life really is.
You want to help back and no one lets you do that.” In short, it is hard to lead
a normal life when everyone treats you as if you are abnormal.

¦
COPING STRATEGIES AND SOCIAL SUPPORT
Coping strategies and social support often look very much alike. For instance,
people may cope with stress by taking steps to improve their situation,
learning more about it, seeking the company of loved ones, having a

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good cry, or talking it out. These activities fall in two main categories, which
also characterize the two main types of social support. As Carolyn Cutrona
and Julie Suhr (1994) describe it, social support may be categorized as
action-facilitating support (performing tasks and collecting information)
or nurturing support (building self-esteem, acknowledging and expressing
emotions, and providing companionship). Here is a description of social
support based on Cutrona and Suhr’s categories.

Action-Facilitating Support

Two types of action-facilitating support are performing tasks and favors and
providing information. For instance, people might support someone trying to
lose weight by sharing fitness information, buying healthy foods, and serving
as exercise companions.

Tasks and favors are called instrumental support (Cutrona & Suhr, 1994).
Research shows that instrumental support is most appreciated when care receivers
feel they are active participants and are involved in decision making
(Bottorf, Gogag, & Engelberg-Lotzkar, 1995).

Informational support might involve performing an Internet data search,
sharing personal experiences, passing along news clips, and so on. Information
can help people increase their understanding and make wise decisions. As
Kreps (2003) points out, “information is the primary process for promoting
cancer prevention” (p. 164) and an important part of coping effectively with
cancer as well. Even when people cannot change their circumstances, those
who are knowledgeable about what is happening usually feel more in control,
experience less pain, and recover more quickly than others (Roter & Hall,
1992). In a book about her experience as a breast cancer survivor, Susan Ryan
Jordan (2001) described the quest for information that made the disease seem
less fearful, reflecting that “fear is worse than death.”

Nurturing Support

Nurturing typically involves three types of support: esteem, emotional, and social
network. These are not directly oriented to task goals, but rather to helping
people feel better about themselves and their situations.

Esteem Support Esteem support involves efforts to make a distressed individual
feel valued and competent. Encouraging words may ease feelings of
helplessness and despair (Wills, 1985). People often report that unconditional
approval is the most helpful form of support. Statements like, “We’re behind
you no matter what you decide,” are comforting reminders that loved ones will
not leave just because the situation is difficult to handle. Being supportive involves
listening effectively (Brady & Cella, 1995). Studies show that most distressed
individuals are not looking for advice; they just want to talk and be
heard (Lehman, Ellard, & Wortman, 1986).
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Communication Skill Builders: Supportive Listening Brant Burleson, a leading
authority on social support, offers the following tips for being a supportive listener
(based on Burleson, 1990, 1994):

¦
Focus on the other person. Give the person a chance to talk freely. Focus on
what he or she is saying rather than your own feelings and experiences.

¦
Remain neutral. Resist the urge to label people and experiences as good
or bad. Likewise, encourage the speaker to describe experiences rather
than label them.

¦
Concentrate on feelings. Focus on feelings rather than events. It is usually
more supportive to explore why someone feels a certain way than to focus
on events themselves.

¦
Legitimize the other person’s emotions. Statements like, “I understand
how you might feel that way,” are typically more helpful than telling the
other person how to feel (or how not to feel).

¦
Summarize what you hear. Calmly summarizing the speaker’s statements
can help clarify the situation and help the distressed individual understand
what he or she is feeling. As Burleson (1994) explains: “Due to the
intensity and immediacy of their feelings, distressed persons may lack
understanding of these feelings” (p. 13).

Emotional Support Emotional support includes efforts to acknowledge and
understand what another person is feeling. This support is particularly valuable
when people must adapt to what they cannot change (Albrecht & Adelman,
1987). In a health crisis it is common to feel angry, baffled, afraid, depressed, or
even unexpectedly relieved or giddy.

Emotions are a natural part of coping with health crises, yet many people
are not comfortable with emotional displays (theirs or others people’s). They
may be afraid to appear weak or be reluctant to upset others (Zimmermann &
Applegate, 1994). The result is that people tend to present the appearance that
things are going well, even when they are not.

No one can deny the power of positive thinking. But problems may arise
when people find themselves feigning a cheerfulness they do not feel or avoiding
subjects they actually wish to discuss. Suppressing emotions commonly
leads to depression and moodiness (Metts & Manns, 1996). When asked, people
(patients, caregivers, and others) often say they avoid sensitive topics because
they do not wish to distress the people around them (Gotcher, 1995).
However, when interviewed individually, the same people usually express the
private wish that those topics be brought into the open. In the long run it is
usually easier to cope when emotions can be brought into the open.

Communication Skill Builders: Allowing Emotions

¦
Do not assume people are “OK” because they do not seem emotional. Quiet
people are at greatest danger for being ignored and misunderstood.

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When people are quiet or apprehensive about communicating, people
around them are less likely to share concerns with them and less apt to
understand their feelings (Ayres & Hopf, 1995). In interviews, fathers of
children with cancer said they were reluctant to discuss their feelings because
they might be overcome by emotion (Chesler & Barbarin, 1984).
These fathers received less emotional support than the mothers did and
were often expected to act “strong” when others were emotional.

¦
Keep in mind that people usually benefit from opportunities to talk openly
and honestly. Cancer patients who feel they can talk about subjects like
death and pain with their loved ones cope better than people who consider
those topics taboo (Gotcher, 1995).

¦
People in grief often find it insensitive and unhelpful when others try to minimize
their losses or get them to cheer up (Lehman, Ellard, & Wortman,
1986). Ivy, the cancer survivor interviewed by Anderson and Geist Martin
(2003), put it this way:

The emotions went up and down, up and down. I talked to Jack and he
listened. There was a point where Jack’s optimism got to me. It was like
stop, you’re not listening to me. I could die, stop. (p. 137)

¦
In Western cultures, seriously ill patients typically appreciate honesty. A participant
in Thomas McCormick and Becky Conley’s (1995) study said:
“That’s one of the things that I like my doctor for, because he was plain
with me that I was incurable” (paragraph 38). She explained that people
who do not know they are dying cannot prepare for it emotionally or
practically. They lose the chance to settle financial affairs, communicate
with loved ones, set new priorities for their limited time, and adjust emotionally
to what is occurring. (As you will see in Chapter 8, members of
some cultures prefer to shield people from negative prognoses, believing
that talking about adverse outcomes will bring bad luck.)

All in all, it is important to remember that emotions are a natural part of the
coping process, and the person who displays strong and even conflicting emotions
may be coping more effectively than the one who keeps a stiff upper lip.
Keeping conversations light and cheerful may discourage people from coping
effectively.

Social Network Support Social network support involves ongoing relationships
maintained even when no crisis exists. Companionship of this sort helps
people feel valued and is a reassuring reminder that friends’ support is always
available (Barnes & Duck, 1994).

Strong networks can enhance our confidence and coping abilities. For example,
teens are most likely to negotiate safe-sex options with their partners if
they come from families that display a problem-solving orientation. However,
teens accustomed to conflict avoidance are more reluctant to bring up safe sex
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and subsequently put themselves (and their partners) at greater risk (Troth &
Peterson, 2000). Likewise, eating disorders such as bulimia are often associated
with low levels of perceived support from family and friends (Grissett &
Norvell, 1992), but teenage girls who regularly engage in mutually satisfying
conflict resolution with their fathers are less likely than other girls to develop
eating disorders (Botta & Dumlao, 2002).

Some evidence suggests that strong social networks can even help us live
longer. For example, elderly men with strong social networks are likely to live
longer and manage job stress more effectively than other men their age (Falk,
Hanson, Isacsson, & Ostergren, 1992). When interviewed, older adults who
have experienced the death of a spouse recommend that the best coping strategy
is to keep busy and interact with others (Bergstrom & Holmes, 2000). They
say the worst strategy is to isolate yourself at home.

Research shows that social networks are more or less supportive depending
on the number of people involved, how often they interact, the level of
conflict during interactions, and the communication skills of those involved
(Grissett & Norvell, 1992; Haring & Breen, 1992). People usually benefit most
from having a number of friends and family members who stay in close contact,
display liking and respect, and handle conflict effectively.

Communication Skill Builders: Keeping Social Networks Active Common
sources of social support include family members, friends, professionals, support
groups, virtual communities, and self-help literature. Each source is likely
to provide a somewhat different form of assistance. Here are some suggestions
for facilitating social support in a variety of contexts.

¦
People need social support even when they seem OK. Although women
give and receive more social support than men (Chesler & Barbarin,
1984), men may need it just as much. Likewise, people with limited
education usually receive more support than highly educated individuals,
probably because people assume highly educated people are self-
sufficient (Choi, 1996).

¦
Friends are important. Friends’ attention is flattering because it is so
freely given (family members are more obliged). Friendship also offers a
pleasing sense of continuity, entertainment, and a gentle reminder that
other people have joys and concerns too (Rook, 1995). In some instances,
friends are even more helpful than family members. When people studied
by Metts and Mann (1996) told loved ones they had HIV or AIDS,
friends were typically more supportive than family, perhaps because the
family members were more overwhelmed by their own emotions.

¦
Emotional support can be as important as doing favors or running errands.

A study of people with chronic fatigue syndrome (CFS) revealed that
emotional support was more helpful than favors and tangible assistance,
even though people with CFS are often too weary to do much on their
own (Kelly, Soderlund, Albert, & McGarrahan, 1999).

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¦
Even simple gestures mean a lot. Experts suggest that friends drop by for
brief visits and make their willingness to help known. When uncertain
what to do, they can provide services like mowing the lawn or leaving a
casserole without fear of being in the way.

¦
Keep family members well informed. When a loved one is in the hospital,
family members may be especially anxious if they do not feel well informed.
This is hard on the families, and it may compromise their ability
to provide support and share important information about the
patient (Cross et al., 1996).

¦
Make family members and loved ones feel welcome. Presbyterian Hospital
Matthews in Matthews, North Carolina, has expanded its critical care
unit so that a family room adjoins each patient room (Daniels, 1996).
Every family room is equipped with soothing artwork, a sofa bed, recliner,
telephone, and a window to provide a view of nature and allow in
sunlight. A kitchen and showers are also available to guests. Nurses report
that patients are less agitated and experience fewer symptoms of
stress and anxiety when loved ones are near. The arrangement also gives
nurses a chance to educate patients’ families and answer their questions.
(The hospital requests that each family choose a spokesperson so nurses
are not flooded with the same questions from different people.)

¦
Health professionals can assist with communication strategies as well as
treatment regimens. Because of their regular experience with health
dilemmas, health professionals may be able to suggest strategies people
would not think of on their own. Consider the dilemma of people who
have had unprotected sex while cheating on their romantic partners.
Health counselors in Marifran Mattson and Felicia Roberts’ (2001)
study helped people find acceptable ways to insist on condom use while
they awaited the results of HIV tests. The counselors first encouraged
clients to be honest with their partners, but if it became clear that clients
would rather expose their unsuspecting partners to a health risk than
admit their infidelity, the counselors sometimes helped people devise
stories to tell instead. In one instance, a counselor suggested a man
could tell his girlfriend he had urethritis (“kind of like a male yeast infection”)
and must use a condom for several months (at which point results
of the HIV test would be available). Such deceptions may seem
questionable, but the alternative (risky sex) may be worse.

Support Groups

Support groups are comprised of people with similar concerns who meet regularly
to discuss their feelings and experiences. As defined by Schopler and
Galinsky (1993), the term support group includes a range of formats, from informal
self-help groups (with an emphasis on shared concerns and minimal
intervention by the facilitator) to treatment groups (providing a form of
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psychological therapy with active guidance by a trained professional). In recent
years, online support groups and virtual communities have joined the list.

In their various forms, support groups are popular around the world. More
than 26,000 Al-Anon/Alateen group meetings are conducted in 30 languages in
115 countries (Al-Anon.Org, 2003). Type the search term “HIV/AIDS Support
Groups” into Google and you will have access to more than 580,000 online resources.
There are also support groups for people dealing with grief, codependence,
an enormous variety of illnesses and addictions, and other concerns.

The effort may be justified. There is evidence that support group members
tend to experience fewer symptoms and less stress and may even live longer
than similar people who are not members (“Living With Cancer,” 1997;
Wright, 2002). Similarly, involvement in support groups has been shown to reduce
depression and anxiety among cancer patients (Evans & Connis, 1995).

Support groups have several advantages. Being around similar others may
make people feel that they are not alone or abnormal. Similar others can also
give firsthand information on what to expect and how to behave. At the same
time, support group members may feel better about themselves because they
are able to help others (Taylor, Falke, Mazel, & Hilsberg, 1988). Another advantage
is the convenience and low cost of support groups. Because they are
made up mostly of laypersons, there are few or no fees and (for the most part)
members can schedule meetings where and when they wish.

The greatest dangers are that support groups will become counterproductive
gripe sessions or that members will develop an us-versus-them viewpoint
(Fisher et al., 1988). They may begin to feel that no one outside the group understands
them as well as they understand each other (a form of oversupport
described later in the chapter).

Communication Technology: Virtual Communities

Communication technology has expanded the options for supportive relationships.
Telephones and computers have given rise to virtual communities,
groups of people with similar concerns who communicate via information
technology.

People can communicate with others online, look up information, correspond
with experts, and even take part in support groups facilitated by health
professionals. There are now than 1 million health-related sites on the World
Wide Web. Although some criticize the Internet for publishing misleading information,
Ferguson (1997) found that people were remarkably savvy about
distinguishing between reliable and questionable health news.

Online support groups allow people to communicate about key issues,
sometimes with the guidance of professional facilitators. Expertise in communication
technology is becoming a useful skill for health professionals. A survey
of social workers indicated that most of them were interested in facilitating
computer-mediated support groups but did not feel confident using the technology
(Galinksy et al., 1997).

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Ferguson (1997) surveyed therapists to gauge the quality of advice typically
offered on computer bulletin boards. In one instance a grieving man who
shared his story online received dozens of immediate replies. People said they
understood how he was feeling and advised him to continue therapy, find solace
in his religious faith, be kind to his wife, accept others’ help, and resist any
temptation to abuse drugs. The therapists Ferguson surveyed applauded the
people’s kind efforts, and most said they would not have been able to help the
man in such an “immediate, compassionate, and practical way” themselves
(paragraph 8).

There is mixed evidence about the impact of virtual communities. Communicating
through technology is a plus for people who are short on time or
transportation, have disabilities or responsibilities that prevent them from leaving
home, or find comfort in the relative anonymity of technology-mediated
conversations (Braithwaite, Waldron, & Finn, 1999; Galinsky et al., 1997). People
with HIV/AIDS who make use of Internet information are found to have
greater knowledge of the condition, more success coping, and larger support
networks than similar people who do not go online (Kalichman et al., 2003).

However, overreliance on technology-mediated communication may prevent
people from developing relationships in their own communities, ultimately
robbing them of the types of social support that cannot be transmitted
via fiber optics. Other disadvantages include difficulty using and obtaining
technology, potential threats to privacy, lost nonverbal cues, and hurtful remarks
people might not make were they face-to-face (Galinsky et al., 1997).

Implications

Coping and social support go hand in hand. Social support is essentially a concerted
effort to help people cope with difficult circumstances. Even a relatively
minor health event can constitute a crisis if the people involved do not have
adequate skills or resources to cope with it. During a crisis, people usually perceive
that their lives have radically changed and they do not have control over
what is happening.

People cope with crises in different ways, some by developing a peaceful acceptance,
others by actively changing their situations. Especially when their
usual coping strategies do not work, people may need assistance developing
new strategies or expanding their efforts. Sometimes people are comforted by
the reinstatement of normal routines and everyday communication. People also
rely on others to help them manage tasks, emotions, esteem, and knowledge.
Social support is conveyed largely through communication. The most effective
communicators are sensitive to the wishes of people they are trying to comfort.

People usually cope more effectively when they can discuss sensitive topics
than when they feel compelled to feign cheerfulness. Do not assume that
individuals are coping well because they are quiet or do not display much
emotion. Research suggests these people often receive less support than others,
although they probably need it just as much.
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Box 7.1 RESOURCES
More About Coping and Social Support
Here are some additional sources of information about supportive communication.
¦
Green, J. O., & Burleson, B. R. (Eds.) (2003). Handbook of communication
and social interaction skills. Mahwah, NJ: Lawrence Erlbaum.
¦
Lewis, M., & Haviland-Jones, J. M. (Eds.) (2000). Handbook of emotions.
New York: Guilford Press.
¦
Miller, J. F. (2000). Coping with chronic illness: Overcoming powerlessness.
Philadelphia: F. A. Davis.
¦
Reinhardt, J. P. (Ed.) (2001). Negative and positive support. Mahwah,
NJ: Lawrence Erlbaum.
¦
Ryff, C. D., & Singer, B. H. (Eds.) (2001). Emotion, social relationships,
and health. New York: Oxford.
¦
Stroebe, M. S. (Ed.) (2001). Handbook of bereavement research: Consequences,
coping, and care. Washington, DC: American Psychological
Association.

Virtual communities and support groups expand the opportunities for
communicating with people who have similar concerns and experiences. (For
more about coping and social support, see Box 7.1.)

The following sections describe social support in two contexts: lay care-
giving and death and dying experiences.

¦
LAY CAREGIVING
It is important to remember that patients are not the only ones in need of social
support. Loved ones and caregivers experience grief, uncertainty, and exhaustion
as well, and their needs are frequently overlooked in concern over the
ill individual. This section focuses on lay caregivers, nonprofessionals who
provide care for others. Lay caregivers are an important source of social support,
but they also need support themselves.

Lay Caregivers’ New Role

The number of lay caregivers has risen in recent years, mostly because the elderly
population is growing and because hospital stays are shorter than they
used to be. Many surgeries are now conducted on an outpatient basis. Patients
recuperate at home rather than in the hospital. This is good news and bad
news. As Donna Laframboise (1998) puts it: “Good news! You can go home
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from the hospital tomorrow. Bad news! You’ll have to do everything yourself,
even though you’re still on crutches or full of stitches” (p. 26).

Someone must help ill or hurt individuals while they are at home. Home
health professionals provide a portion of this care, but researchers estimate
that two thirds of all home health is provided by family members for free
(Joyce, 1994).

Profile of the Lay Caregiver

Most lay caregivers in the United States are women (average age 46), and most
care receivers are elderly relatives (average age 77) (Kate, 1997). Women’s influence
as lay caregivers is well documented. Married men tend to live longer than
single men, and men’s health is likely to decline if their wives die (Norcross,
Ramirez, & Palinkas, 1996). This is true largely because women monitor their
husbands’ health and encourage them to seek medical attention when needed.
Women do the same for their friends and children.

Lay caregivers’ time is in demand like never before. More than half of
American women now work outside the home (“Comprehensive Survey,”
1998). Additionally, a growing number of men and women are entering the
Sandwich Generation, a popular term for people who provide care for both
their parents and their children. By some estimates, young adults today will
spend more time caring for their elderly parents than they will spend raising
their own children.

Stress and Burnout

Caregiving is no simple task. In addition to providing medical care and assistance,
lay caregivers are frequently responsible for maintaining the household
and budget, working at a career outside the home, and providing information
and support to others. Many women caregivers report spending at least 35
hours a week earning a paycheck and at least 10 additional hours a week providing
care for loved ones in need (Jenkins, 1997).

Legislation was passed in the 1990s to help career people provide care for
needy family members. The Family and Medical Leave Act of 1993 guarantees
that people can take up to 12 weeks off work to care for ailing family members,
seek medical care themselves, or bring new children into their families
(through birth, adoption, or foster parenting). However, the act does not require
that employers pay workers while they are on leave, and it does not apply
to all companies or all employees. To be eligible, employees must have
worked at the company at least 1 year for an average of 25 hours (or more) per
week. Only companies with at least 50 employees are obligated to provide
medical and family leave.

Although most people juggling careers and caregiving feel good about
what they do overall (Scharlach, 1994), it is easy to feel stressed, exhausted, and
resentful at times. Said a 31-year-old caring for her ill mother: “Your parents
have given you so much that the last thing you’re ever going to do is not help
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Box 7.2 PERSPECTIVES
A Long Goodbye to Grandmother
A few years ago, I lost my grandmother to Alzheimer’s disease. Until she
died, I saw my grandmother every week of my life. We had a very close
relationship.
Alzheimer’s is not a disease that just appears one day and kills you. It
causes gradual deterioration of a person’s memory and sense of being.
Minutes and days and years all seem the same or don’t exist at all. My
grandmother’s condition started about 1 year before her death.
Before Grandma got Alzheimer’s, our extended family was fairly close.
No one wanted to put Grandma in a nursing home, but caring for her
was not going to be easy. Her three daughters (including my mother) decided
Grandma would stay with each of them for 1 week at a time.
Grandma and I had always enjoyed playing Scrabble and working
crossword puzzles together. She always tried to get me to use my thinking
skills. My favorite times were when she would tell me stories about when
she was a young girl or a teenager. She was a very flirty girl, although she
had a prissy attitude as an elderly person.
As Grandma’s forgetfulness worsened, she often forgot what year it
was. She would also forget to eat. Soon, she could no longer remember
conversations we had had. I could answer a question and 5 minutes
later, she’d ask it again. I would tell her every week why and where I was
going to school. We would talk about the world now compared to the
world in her day. Sometimes she would talk out loud to her parents, who
had been dead 50 or 60 years.
Her worst times were at night. She stayed up most of the night talking
to people she thought were there. As much as I loved Grandma, I would
get aggravated with her during those nights of constant talking. Several
times a night, we’d go into her room to comfort her. She’d whine and cry
like a child. It was difficult for me to deal with this. I started distancing

them out. But at the same time, it’s so hard. I get resentful sometimes”
(Laframboise, 1998, p. 26).

Part of the strain is emotional. Caregivers may grieve over future plans
that no longer seem possible. A 76-year-old woman caring for her ailing husband
lamented: “This isn’t how we planned to spend our retirement years. . . .
Why did this happen to us?” (Ruppert, 1996, p. 40).

It is also painful to see a loved one suffer or change. The progression of
Alzheimer’s disease is particularly heart-wrenching to witness. Caregivers may
watch sadly as the individual’s personality and awareness gradually change.
Sometimes Alzheimer’s patients become belligerent or unable to recognize the
people around them (see Box 7.2). To make matters worse, caregivers may feel
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myself from her during the day because she made me angry with the
things she did at night. Even though I knew she had no idea what she
was doing, it still aggravated me.

The stress starting wearing on other family relationships as well. The
daughters started finding fault with each other. No one said anything
out loud, but the frustration was there under the surface. I was sad to
see relationships start to disintegrate. I asked my grandmother to forgive
me even if she didn’t quite understand why.

Over the months, Grandma’s condition deteriorated. She lost touch
with reality and she lost trust in her family. One day she and I were home
by ourselves and I got her a glass of water. When I gave it to her, she
smelled it. Then she looked at me and said, “I never thought you would
do this.” I asked what she meant, and she said, “Of all people, I didn’t
think you would poison me. I expected the others, but not you.” This
hurt me very much. I took the glass of water and poured it down the sink
and let her watch me pour a new glass. But she continued to believe I
was trying to kill her.

By the time she died, Grandma weighed less than 95 pounds. The
times that I could talk with her were over. She stayed with us for the last
month of her life. She was in such bad condition we didn’t want to move
her. The night of her death my mom and dad left for church and I stayed
behind. I read her the Bible and sang her some songs while I played my
guitar. As I did this she began to cry a little. I didn’t expect her to respond,
but that was a special moment. About 5 hours later, she died in
her bed with her family in the room with her.

—Nicholas

guilty about their own frustration and resentment. It may feel wrong to be angry
with a person who is ill and needy (Moynihan, Christ, & Silver, 1998).

Lay caregivers may also feel unprepared to perform the tasks delegated to
them. Although they now perform many services once carried out by health
professionals, lay caregivers often receive only minimal instruction on what to
do and what to expect (Ruppert, 1996). As a result, they may feel overwhelmed
and may worry that they will do something wrong or miss important warning
signs. When a loved one’s life is at stake, the pressure can be as exhausting as
the physical demands of caregiving.

Caregivers may jeopardize their own health if they overextend themselves.
People are like elastic, says Geila Bar-David of the Caregiver Support Project in
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Toronto (Laframboise, 1998). If they are stretched too thin for too long, they
will lose strength and may even snap. Caregivers who are reluctant to leave
their posts may need reminding that they will be of no use unless they remain
healthy (emotionally and physically) themselves.

Caring for Caregivers

Community resources are expanding somewhat to serve the needs of people
who care for loved ones at home. Many medical centers now sponsor lay caregiver
support groups and skills-training programs. A program at Salem Hospital
in Salem, Oregon, helps lay caregivers establish diet and exercise regimens
and teaches them skills such as how to move patients without hurting themselves
(Ruppert, 1996). Members also learn about caregiver stress and emotions
and have a chance to express their feelings. Good communication skills can
help. In a study of 76 older adults and lay caregivers, Jim Query, Jr. and Kevin
Wright (2003) found that participants with high communication competence
were less stressed and more satisfied with the social support they received.

Friends and families remain the most promising source of support for lay
caregivers. In a particularly striking example of social support, 40 people in
Fairfax, Virginia, organized themselves to help a dying friend and her family
(“What Her Friends Did,” 1997). Lynn Mazur was inspired by the book, Share
the Care (Capossela, Warnock, & Miller, 1995). She organized a group effort
to help her friend, Karen Hills, who was dying of cancer at age 34. Mazur
called everyone in the Hills’ family address book and found 40 people anxious
to help out. They met at the Hills’ home and filled out questionnaires suggesting
what they could each contribute to the effort. Team captains were chosen,
and soon volunteers were in place to drive Karen’s young daughter to
school, clean house, prepare meals, read to Karen, help with her physical therapy,
and so on. The assistance allowed Karen and her husband and child to
spend more relaxing time together. The tasks were simple and quick enough
that burnout was not a problem. In fact, Mazur says, people were relieved to
know they could help, and caregivers turned to each other for support when
they were tired or sad.

All in all, it is important to remember that caregivers need care too. Assistance
can sweeten the rewards of caregiving and lessen the demands.

¦
DEATH AND DYING EXPERIENCES
Death is an unpleasant topic to people in many Western cultures. “Death is un-
American. It doesn’t square with our philosophy of optimism, of progress,”
wrote Herbert Kramer, a terminally ill cancer patient (Kramer & Kramer, 1993,
paragraph 21). Nevertheless, dying is inevitable, and it marks a stage of life
during which social support is crucial. Because communication figures so
prominently in social support efforts, an understanding of death and dying is
crucial to the study of health communication.

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To some people, the phrase “a good death” seems like an oxymoron. They
do not believe there is any such thing. However, many people argue that dying
can be a special (albeit emotional) experience with many positive aspects. This
section analyzes these two perspectives, characterized as “life at all costs” and
“death with dignity.” It also explains advance-care directives and offers experts’
advice on dealing with death.

Life at All Costs

Have you ever happened to walk past a hospital morgue? Probably not. Most
hospitals locate the morgue (where dead bodies are kept) in an out-of-theway
area where people will not chance upon it. What’s more, the morgue staff
may be regarded as somewhat weird and eccentric based on their choice of
occupation.

This may seem perfectly understandable if you grew up in a society in
which death was regarded as something gross and ghoulish. Death may seem
even worse if you are a caregiver pledged to maintain life. To you, death may
be more than creepy; it may represent failure (Hyde, 1993).

Medicine’s dedication to preserving life has many benefits. Caregivers’ devotion
and talent, along with their access to medical technology, has helped to
increase the average American’s life expectancy by 60% in the last century (“By
the Numbers,” 1995). Few Americans lived beyond 47 in 1900. Now the average
lifespan is 76.3 years.

Caregivers have several reasons to keep patients from dying. For one,
caregivers are typically trained to preserve life, not allow it to end. Moreover,
death is frightening, even to professionals who have encountered it before
(McCormick & Conley, 1995). Saving a life is usually a rewarding experience,
whereas a patient’s death may bring feelings of guilt and grief. Finally, caregivers
(doctors especially) may be harshly criticized or sued if a patient dies.
Physicians’ decisions are often intensely scrutinized by family members,
lawyers, insurance companies, quality assurance and risk management personnel,
administrators, and others (McCue, 1995). Jack McCue attests: “It is
little wonder that physicians engage in inappropriately heroic battles against
dying and death, even when it may be apparent to physician, patient, and
family that a rapid, good death is the best outcome” (paragraph 2).

There are downsides to the life-at-all-costs perspective. As McCue (1995)
proposes, “a rapid, good death” is sometimes preferable to a prolonged, painful
end. Prolonging life sometimes means prolonging death. Furthermore, this
perspective does not account well for the needs of patients with terminal illnesses.
Dying individuals often feel forgotten and ignored because their caregivers
are uncomfortable with death, reluctant to become emotionally
involved, and uncertain how to act around dying people (Hyde, 1993).

Finally, the opportunity to die peacefully among loved ones is sometimes
lost in the confusion of tubes, wires, monitors, and hospital restrictions (Cohn,
Harrold, & Lynn, 1997). It is hard for loved ones to be present, and difficult to
maintain a sense of intimacy and individuality, in an institutional setting like a
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hospital. Communication scholar Sandra Ragan reflects on the difference between
her father’s death and her sister’s:

Dad’s death was a conflicted one: he died in a hospital, connected to various

machines, and in constant fear, until his last 48 hr when he entered a

morphine-induced semi-consciousness, that his doctors would not give

him adequate medication. (Ragan, Whittenberg, & Hall, 2003, p. 219)

In contrast, her sister died at home under Hospice care:

Sherry died peacefully in her own home with no medical intervention other

than oxygen, a catheter, and the blessing of morphine and ativan. Her family

and loved ones surrounded her, and throughout her last night, she was cra
dled by her daughter and her beloved cocker spaniel. (Ragan et al.,

pp. 219–220)

Death With Dignity

The motto of death with dignity is attributable mostly to Hospice, an organization
that provides support and care for dying persons and their families.
About half of all dying patients in the United States now receive Hospice care
(Emanuel & Emanuel, 1998).

Hospice is designed to help people feel as comfortable and satisfied as possible
during the last stage of their lives. Central to Hospice’s philosophy is the
belief that death is a natural part of life, thus personal and unique (McCormick
& Conley, 1995). People are encouraged to die as they have lived, surrounded by
the people and things they love most.

Hospice volunteers and professional caregivers visit with terminally ill
individuals and their loved ones to talk with them about death, make sure
the dying person is not in pain, encourage spiritual exploration, and provide
many forms of assistance. In this effort, Hospice is more oriented than orthodox
medicine to personal expression, emotions, spirituality, and social
concerns. Loved ones are considered important participants in the dying
process.

Beth Perry, a Hospice nurse, recalls an especially rewarding experience
helping a dying patient. “Roman, a handsome man in his mid-50s, seemed too
well to be a patient on a palliative care unit,” she remembers (Perry, 2002,
paragraph 5). But Roman was dying, and he was bored and tired of the
process—ready for the tedium to end. Although Roman’s caregivers knew his
death was near, they sought a way to rekindle his sense of purpose. Someone
remembered that he and his wife had bought a new home just before he became
ill, and the grounds were not yet landscaped. They suggested that the
couple plan the garden and grounds together. “The result was amazing,” writes
Perry (paragraph 7):

The next time we visited the pair, gone was the stony silence, the painful

watching of time tick by. Instead, we found the two of them with their noses

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in the same magazine, eagerly debating annuals versus perennials, tulips versus
delphiniums.

Although Roman did not live to plant the garden, his last days were filled
with enthusiasm rather than boredom. Julie, another nurse caring for Roman,
says, “People can take almost anything, but they can’t take being forgotten.
They want to know that something they have done will live on after they die,
and sometimes it is part of my role to help them’’ (quoted by Perry, 2002,
paragraph 8).

Advance-Care Directives

Advance-care directives describe in advance the medical care a person wishes
to receive (or not receive) if he or she becomes too ill to communicate. These
directives take some of the pressure off caregivers and loved ones, who might
otherwise be forced to make those decisions on their own.

Despite the advantages, the majority of U.S. residents have not written
advance-care directives or even conveyed their wishes about end-of-life care
to their physicians. In one study, more than half of the patients surveyed had
not discussed their preferences regarding end-of-life care with their doctors
(Hofmann et al., 1997). Of those, about 25% revealed to researchers that they
would not wish to be kept alive with artificial life support.

Advance-care directives have become more specific through the years.
When they were first conceptualized as “living wills” in the 1960s, they typically
referred in vague terms to “heroic” life-saving measures (Emanuel &
Emanuel, 1998). This presented obvious difficulties in interpretation (e.g., Is
a feeding tube heroic? Is intravenous therapy heroic?). It is now common for
advance-care directives to include a person’s preferences regarding specific
procedures and circumstances, to endow someone with decision-making authority,
and to describe the person’s philosophy of life and death to help guide
decisions during unanticipated circumstances. (See Box 7.3 for a discussion
of the right-to-die issue.)

Coping With Death

One positive aspect of death is that it draws people together. Loved ones who
may not have seen each other in years unite again with a common concern.
Death also provides an occasion for contemplating life and the purpose of living.
A sense of insight and spirituality often surrounds death (McCormick &
Conley, 1995). Moreover, by sharing in loved ones’ deaths, people may become
less fearful of death themselves. Joyce Dyer, who wrote In A Tangled Wood
(1996) about her mother’s 9-year experience with Alzheimer’s disease, reflected
after her death:

I want to remember every moment I had with my mother, including every
second of the last nine years. I want to remember her toothless grin, her
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Box 7.3 ETHICAL CONSIDERATIONS
Do People Have a Right to Die?
In 1997, Oregon made history by legalizing physician-assisted suicide for
terminally ill patients. Under the law, a doctor may help a person commit
suicide if at least two physicians verify that the person has less than 6
months to live and the patient requests help with suicide at least once in
writing and twice verbally with at least 15 days between requests (“Oregon
Begins,” 1998).
Physician-assisted suicide refers to instances in which, at the request
of a terminally ill person, a doctor provides the means for that person to
end his or her own life (Krug, 1998). This is different from euthanasia
(also called mercy killing), in which a physician or family member intentionally
kills the patient to end his or her suffering. The distinction lies in
who does the killing—the patient or another person.
The person most commonly associated with physician-assisted suicide
is Jack Kevorkian, a physician who, by his own estimate, has assisted in
the suicides of 130 people since 1990 (Robertson, 1999). Kevorkian was
tried for murder five times, but he was not convicted until the fifth trial,
which concluded in April 1999. Kevorkian was declared guilty of second-
degree murder by a Michigan jury and sentenced to 10 to 25 years in
prison. The conviction was based on an assisted suicide that Kevorkian
videotaped and allowed to be broadcast on 60 Minutes (Willing, 1999).
Kevorkian argues that he is motivated by compassion for people dying
slow, painful deaths. His opponents charge that he is a medical “hitman”
operating outside the law (Robertson, 1999).
Controversy over physician-assisted suicide is likely to continue for quite
some time with people vigorously arguing both sides of the issue. Proponents
of physician-assisted suicide include Dax Cowart, who was badly
burned in an explosion in 1973 (Cowart & Burt, 1998). Two thirds of
Cowart’s body was burned in the accident, and he lost his eyesight and his
fingers. For more than a year Cowart begged doctors to let him die. Despite
his pleas, medical teams continued to treat his burns. The treatment
kept Cowart alive and eventually helped him regain the ability to walk. But
for more than a year he was in nearly unbearable agony. He recalls: “The
pain was excruciating, it was so far beyond any pain that I ever knew was
possible, that I simply could not endure it” (paragraph 21). Cowart supports
physician-assisted suicide. However, even if a law like Oregon’s had
been in place when his accident occurred, he would not have qualified for
lawful physician-assisted suicide because he was not dying.
Cowart is now an attorney in Corpus Christi, Texas, and describes
himself as “happier than most people.” But he maintains his conviction
that people should not be forced to undergo treatment they do not wish,
even if that treatment is needed to keep them alive (Cowart & Burt,
1998). Faced with the same ordeal again, he feels he would wish to die
and should be allowed to do so. Cowart’s views are captured in his
videos Please Let Me Die and Dax’s Case.
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On the other side of the issue, some argue that people in intense pain
and grief may not see things clearly enough to make life-ending decisions.
They point out that Cowart has changed his mind about living
with his disabilities. Although he initially felt life would be empty, he
now is happy and successful (Cowart & Burt, 1998). Other critics say ill
(even terminally ill) patients may request death for the wrong reasons.
They may be afraid about the future, feel out of control and scared, or
believe they are a burden to loved ones (Muskin, 1998). For these reasons,
they feel it is wrong to help someone commit suicide, even if the
person requests it.

What Do You Think?

1.
Under what circumstances, if any, do you feel patients should be
assisted in killing themselves?
2.
Should it make a difference whether a patient is terminally ill or not?
3. If you were in Dax Cowart’s place, do you feel you would want to
die? What would you have done if you were Cowart’s caregivers
and loved ones?
4. What do you think of the argument that people who are scared
and in pain may be not thinking clearly enough to make life-ordeath
decisions?
5. What do you think of the counterargument—that people should
not second-guess the patient’s wishes because they cannot fully
understand the extent of his or her personal suffering?
Suggested Sources

Cowart, D., & Burt, R. (1998). Confronting death: Who chooses, who
controls? The Hastings Center Report, 28, 14–24.

Kenny, R. W. (2001). Toward a better death: Applying Burkean principles
of symbolic action to interpret family adaptation to Karen Ann
Quinlan’s coma. Health Communciation, 13(4), 363–385.

Kenny, R. W. (2002). The death of loving: Maternal identity as moral
constraint in a narrative testimonial advocating physician-assisted
suicide. Health Communication, 14(2), 243–270.

Krug, P. (1998). Where does physician-assisted suicide stand today?
Association of Operating Room Nurses Journal, 68, 869.

Muskin, P. R. (1998). The request to die: Role for a psychodynamic perspective
on physician-assisted suicide. Journal of the American Medical
Association, 279, 323–328.

Robertson, T. (1999, March 26). Michigan jury gets Kevorkian case:
Defendant cites civil rights leaders. Boston Globe, p. A3.
Willing, R. (1999, April 14). Kevorkian sentenced to 10–25 years. USA
Today, p. A1.
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screams, her growing fondness for sweets and then for nothing at all, the
bouquets of uprooted flowers she picked for me from her unit’s patio, the
way she tried to fold her bib, the rare pats on my cheek that meant everything,
her last words, her last party, her last dance. And I want to remember
what I learned from aides and nurses, from volunteers and cleaning staff,
from my mother’s own sick friends. I don’t want to forget a single thing.
(Dyer, 1996, p. 136)

People may be surprised by the mixture of emotions they feel about death.
Most of us are not sure what to expect, and consequently we are often uncertain
how to act around dying individuals. One nurse described her initial discomfort
when a young man in her care joked that he had to live quickly
because he would not live long (Erdman, 1993). The nurse was eventually able
to laugh with the young man when he quipped that he was watching movies
on fast forward and bathing his dog in the drive-through carwash to save time.
Writes Erdman: “The nurse was at first caught off guard by the patient’s comments,
but the humor opened the door to further communication about
death” (p. 59).

Caregivers may take a patient’s death especially hard. Janice Rosenberg
(1996) writes that a doctor is typically regarded as “super-scientist, able to confront
death and beat it every time” (paragraph 3). Even physicians may expect
themselves to be superhuman, and they may feel guilty and sad when outcomes
are less than perfect. To make matters worse, doctors may consider it
unprofessional to feel or show emotions (Haug, 1996).

Usually, whether a death is good or bad depends on the emotional coping
resources of the people surrounding it. Supportive gestures are especially helpful,
but insensitive actions are especially hurtful. McCue (1995) recommends assistance
and social support for caregivers and loved ones. Often, he asserts, elderly
individuals accept their own deaths as deeply personal and spiritual, but they
are adversely affected by the fear and dread of well-meaning others. Supporting
caregivers and families is important for their sake and for the patients’ sake.

Communication Skill Builders: Coping with Death

Here are some techniques for dealing with death suggested in the literature.

¦
Develop a realistic perspective. The first step in coping with death is to
develop a realistic understanding of the process. Based on news reports
and movies, people typically imagine death as violent and scary. However,
the majority of deaths are nothing like that. Colin Parkes (1998)
describes the typical death as a “quiet slipping away” without pain or
horror.

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Talk about death. The second step is to make death and relevant issues
acceptable topics of conversation. Bringing issues like pain, death, and
cancer into the open can reduce the horror that seems to lurk around
them (Parkes, 1998). Such discussions benefit the dying person as well

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as others. People who work with dying individuals often say they are
more peaceful about death because of it and are grateful for the lessons
dying people have shared with them (Sadler & Marty, 1997).

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Accept emotions. Finally, accept that emotions are a natural and legitimate
part of coping with death. It is normal to feel a range of intense
emotions when dealing with death and dying.

In her book On Death and Dying, Elisabeth Kubler-Ross (1969) describes
death as occurring in five stages: denial and isolation, anger, bargaining, depression,
and acceptance. Not everyone experiences all five stages, or in the order
given, but dying individuals and the people around them are likely to
experience many of these phases. Although with enough time and support,
many people eventually feel peaceful about death, they may at times refuse to
believe what is told them, or they may feel angry, overwhelmed, sad, or hopeless.
Often, people feel their god has let them down, and they react by showing
anger or attempting to bargain for mercy. It may be reassuring to remember
that these stages are common and legitimate components of the coping process.

Implications

As the need for lay caregivers has risen, the demands on lay caregivers’ time
have increased as well. The traditional expectation that women will provide
care for loved ones continues, but American women are more likely than
ever to have careers outside the home. Americans are living longer, and intergenerational
relationships are becoming more extended, with the accompanying
benefits and stress. Support groups, skills-training programs, and
the assistance of family and friends are promising sources of support for lay
caregivers.

Although most people would prefer to avoid death for as long as possible,
the process does have some positive aspects. Medicine has traditionally considered
death a failure to be avoided at all costs, but groups such as Hospice
promote the philosophy that there is such a thing as a good death. For the
most part, a good death unites people in a sense of peace and comfort. Treating
it in a realistic and open way can help. (For more information about death
and dying experiences, see Box 7.4.)

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OVERSUPPORTING
Before closing this chapter on social support it is important to acknowledge
that there can be too much of a good thing. Some attempts at social support
hurt more than they help. Especially if “supportive” efforts are offered inappropriately
or profusely, they can impair people’s coping abilities. This section
looks at oversupport, defined as excessive and unnecessary help (Edwards &
Noller, 1998). Following is a discussion of three types of oversupport: over-
helping, overinforming, and overempathizing.
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Box 7.4 RESOURCES
Insight About Dying Experiences
For insightful and compelling insight about the dying process, I recommend
these programs:
¦
Like Rembrandt Draperies: A Portrait of Cathy Tingle, an unforgettable
documentary about a woman’s experience with cancer, the oncologist
who became her friend, and the sometimes frustrating experience
of struggling for control when medical professionals refused to
listen to her. Available for purchase through LifeWorks Video at
www.lifeworksvideos.com. Not rated.
¦
Wit, starring Emma Thompson as a professor who finds out she has
advanced-stage ovarian cancer. The 99-minute movie shows the
frustrations and rewards of interacting with medical professionals.
Produced by Warner Home Video. Rated PG-13.
¦
On Our Own Terms: Moyers on Dying , a four-part series in which Bill
Moyers chronicles the experiences of dying individuals, their loved
ones, and health care professionals. Produced by Films for the Humanities,
Inc. for the Public Broadcasting System. Not rated. Available
at www.shop.pbs.org.

Overhelping

Overhelping is providing too much instrumental assistance. This can make
people feel like children or shield them from life experiences. People who are
overhelped may become needlessly dependent on others, feel left out of life activities,
and begin to doubt their own abilities (Goldsmith, 1994).

Helen Edwards and Patricia Noller (1998) found that some women’s take-
charge attitude led them to be overly domineering in caring for their elderly
husbands. Couples in this situation reported high conflict and low morale.
Their relationships and their attitudes suffered.

Overinforming

Forcing information on people when they are too distraught to understand it
or accept it (overinforming) may only heighten their stress. Philip Muskin
(1998) calls this “truth dumping” and warns people against it. Health-related
information can be confusing and frightening. Facts change and outlooks
vary. People may shy away from the truth, preferring to preserve hope or minimize
their confusion. The theory of problematic integration describes how
people make sense of ambiguous, contradictory, and complex information.
(See Box 7.5 for more about this theory.)
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Chapter 7. Social Support 197

Box 7.5 THEORETICAL FOUNDATIONS
Theory of Problematic Integration
Imagine that you will go through life knowing with relative certainty what
to expect and how to feel. Perhaps you will graduate, establish a rewarding
career, stay healthy and fit until retirement, and enjoy your later years
with the money you have wisely saved along the way. At least this is what
you expect and what you hope for.
The theory of problematic integration is based on the idea that we
orient to life in terms of expectations (what we think will probably happen)
and evaluations (whether occurrences are good or bad) (Babrow, 2001).
However, our expectations and values are challenged almost constantly
in large and small ways. (Although this sounds regrettable, the challenges
are actually opportunities for greater development, a point to be discussed
presently.)
As defined by Austin Babrow and colleagues, the theory of problematic
integration describes a process in which communication serves to establish
a relatively stable orientation to the world, but also to challenge
and transform that orientation (Babrow, 1992; Brashers & Babrow, 1996;
Ford, Babrow, & Stohl, 1996). Problematic integration (PI) occurs when expectations
and evaluations are at odds, uncertain, changing, or impossible
to fulfill. The disruption may be relatively minor (perhaps a setback
that delays graduation) or major (someone close to you is diagnosed with
a life-changing illness). Whatever the case, communication will play a pivotal
role at every stage of your experience. As Babrow (2001) puts it:
Communication shapes conceptions of our world—both its composition
and meaning, particularly its values. [Problematic integration
theory] also suggests that communication shapes and reflects problematic
formulations of these conceptions and orientations to
experience. (p. 556)
In recognizing that communication helps to define, challenge, and
transform our experiences, Babrow (2001) makes the point that uncertainty
is not inherently bad or good, and we are not always able to extinguish
uncertainty by dousing it with information. Sometimes uncertainty
exists because we have too little or too much information, or because we
are not sure what to make of the information presented us. Furthermore,
resolving one uncertainty may produce others. Babrow writes that “PI
permeates human experience” (p. 564) although it is difficult to predict
when and how uncertainties will arise. Going back to Babrow’s first
point, the notion of uncertainty is not necessarily undesirable. Indeed, he
suggests that uncertainty presents an “opportunity for self-exploration”
(p. 563). (For exploration of a similar idea, see the feature on health as
expanding consciousness in Chapter 8.)
continued
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198 Part Three. Social and Cultural Issues

Box 7.5 THEORETICAL FOUNDATIONS
Theory of Problematic Integration, continued
Consider the example of advance-care planning provided by Stephen
Hines (2001). Medical professionals have typically been disappointed by
patients’ disinclination to specify what care they wish to have (or forgo)
should they become too ill to express their wishes. Hines suggests that
people shy away from the issue because health care professionals, in their
desire to reduce their own uncertainty in end-of-life situations, have not
been very sensitive to the uncertainties experienced by prospective patients
and their loved ones. In short, people may neglect to file advance-
care directives—not because they are indifferent or stubborn—but
because the uncertainty they present feels unmanageable.
This brief review does not encompass all the facets of problematic integration
theory, but hopefully it does illustrate something about the way
people constitute, challenge, and transform their understandings, particularly
in health-related crises.
Suggested Sources
Babrow, A. (2001). Uncertainty, value, communication, and problematic
integration. Journal of Communication, 51(3), 553–573.
Babrow, A. S. (1992). Communication and problematic integration: Understanding
diverging probability and value, ambiguity, ambivalence,
and impossibility. Communication Theory, 2, 95–130.
Bradac, J. J. (2001). Theory comparison, uncertainty reduction, problematic
integration, uncertainty management, and other curious
constructs. Journal of Communication, 51(3), 456–476.
Ford, L. A., Babrow, A. S., & Stohl, C. (1996). Social support messages
and the management of uncertainty in the experience of breast cancer:
An application of problematic integration theory. Communication
Monographs, 63, 189–208.
Hines, S. C. (2001). Coping with uncertainties in advance care planning.
Journal of Communication, 51(3), 498–513.

Overempathizing

Overempathizing is actually something of a misnomer, because it applies only
to a particular type of empathy, called emotional contagion. In a general sense,
empathy is the ability to show that you understand how someone else is
feeling. Miller and colleagues (1995) have identified two components of empathy:
Empathic concern is an intellectual appreciation of someone’s feelings;
emotional contagion involves actually feeling emotions similar to the other
person’s. Research shows that the second kind, emotional contagion, can be
overdone.
Chapter 7. Social Support 199

One drawback of emotional contagion is that it can be exhausting. Miller
and colleagues (1995) identified a link between emotional contagion and emotional
exhaustion among people who work with homeless individuals. As you
may recall from Chapter 4, emotional exhaustion is a component of burnout
characterized by reduced motivation and compassion.

Taken to extremes, emotional contagion can also be detrimental to support
receivers. Some of the literature on support groups warns that members sometimes
empathize so much with each other that they perceive people outside the
group to be ignorant and uncaring. Jeffrey Fisher and co-authors noted this effect
among HIV/AIDS support group members (Fisher, Goff, Nadler, & Chinsky,
1988). The perception that others are less empathic may discourage group members
from developing social networks with diverse people.

Another danger is that people may hesitate to express themselves to listeners
who are likely to become upset. In Eric Zook’s (1993) case study, a man
who cared for his dying partner at home remembers: “As long as I was kind of
detached and logical about it, he would take it [his declining health] very well”

(p. 117). The perceived need to seem unemotional and in control can make it
seem that people do not need social support, when in fact they do. Men, particularly,
may be uncomfortable with emotional displays (Chesler & Barbarin,
1984), and may prefer to confide in people who will remain calm.
Finally, some people find emotional empathy overwhelming or belittling
(Goldsmith, 1994). They may avoid scenes in which others seem to pity them.
Wayne Beach (2002) describes the “stoic orientation” adopted by a father and
son discussing the news that the mother was diagnosed with cancer. The son
received the news calmly. Rather than reacting emotionally, he initially responded
with a series of “OKs” and technical questions such as “That’s the one
above her kidney?” (p. 279). Beach speculates that this factual, stoic orientation
saved the father and son from immediately “flooding out.” In this way, they
were able both to maintain composure and to display that they were knowledgeable
and capable of coping with the news.

Implications

Although social support is usually positive, excessive or inappropriate efforts
can have negative consequences. Overhelping restricts care receivers’ activities
and may diminish their self-confidence. Overinforming, or truth dumping,
can destroy people’s hope and make them feel overwhelmed. Likewise, when
listeners become overly emotional about speakers’ concerns, they may inadvertently
discourage them from sharing their feelings.

¦
SUMMARY
A diverse number of behaviors make up social support. Support is useful in
everyday life and in times of crisis. What is most supportive depends on the
nature of the situation, the people involved, and their perception of health

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self-efficacy. Sometimes problem solving is the most effective coping strategy.
In those instances, instrumental and informative support are likely to be appreciated.
When the situation calls for emotional adjustment, nurturing support
may be a useful way to help people feel better about themselves, express
their emotions, and feel that others will stand by them in times of trouble.

Being normal sounds easy, but to members of society viewed as abnormal,
achieving a sense of normalcy can seem as impossible as it is desirable. People
do well to remember that individuals who are disabled or ill do not usually
benefit from being treated as if they are childlike or helpless.

Communication is most supportive when it allows distressed individuals
to express themselves as they wish and to set the pace for talk and action. Supportive
listeners are attentive, nonjudgmental, and able to help people understand
their own emotions.

Sometimes efforts that are meant to be supportive hurt more than they
help. Too much assistance can make people feel helpless and dependent. Too
much information or ill-timed disclosures can tax people’s coping ability, and
emotional contagion can be exhausting and can discourage people from describing
their feelings.

Lay caregivers are an important source of social support, but they too
need support, especially considering the many demands placed on at-home
caregivers. Likewise, death and dying experiences represent important opportunities
for social support. When people are able to cope effectively, death may
bring people together and help them overcome their fears.

¦
KEY TERMS
social support support groups
coping virtual communities
problem solving lay caregivers
emotional adjustment Family and Medical Leave Act
health self-efficacy of 1993
internal locus of control Hospice
external locus of control advance-care directives
crisis physician-assisted suicide
normalcy euthanasia
action-facilitating support oversupport
nurturing support overhelping
instrumental support overinforming
informational support theory of problematic integration
esteem support empathy
emotional support empathic concern
social network support emotional contagion
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REVIEW QUESTIONS
1. What two efforts are usually involved in coping?
2. How is a sense of normalcy related to social support?
3. What are two types of action-facilitating support?
4. What are three types of nurturing support?
5. What are some tips for supportive listening?
6. In what ways is support group involvement typically beneficial? In what
ways can it be harmful?
7. What are the advantages and disadvantages of virtual communities?
8. Describe provisions of the Family and Medical Leave Act of 1993.
9. What factors typically contribute to stress and burnout among lay
caregivers?
10.
Have you experienced the death of a loved one? How did it compare
to the process described in “A Long Goodbye to Grandmother”
(Box 7.2)?
11. In your opinion, is there such thing as a good death? If so, how would
you describe a good death?
12. Why might caregivers adopt a life-at-all-costs perspective?
13. What are the potential disadvantages of a life-at-all-costs perspective?
14. What role does Hospice play?
15. What is your opinion of the right-to-die issue (Box 7.3)? Why?
16. What are some tips for coping effectively with death?
17. In what ways can people be oversupportive? What are the likely
outcomes of different types of oversupport?
18. What does the theory of problematic integration suggest about the
nature of uncertainty and how we manage it?
¦
CLASS ACTIVITY
Comforting a Friend

Tom has just learned that Marcos, a high school friend, has died in a car accident.
Fighting back tears, Tom says to you, “I can’t believe it. Marcos called me
a couple weeks ago and I never got around to calling him back. Now he’s gone
forever.”

Decide what you would do to comfort Tom (a few possibilities are listed
below) and compare notes with your classmates. Keep in mind that there is no
perfect way to provide social support. The options you choose may reflect different
personal preferences and cultural assumptions.

Which (if any) of these strategies would you adopt, and why?

¦
Distract Tom so he doesn’t think about the death too much. Suggest a movie
or game of tennis to take his mind off things.
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Tell Tom he shouldn’t feel guilty about not calling Marcos back.

¦
Tell Tom you know just how he feels.

¦
Tell Tom you can understand why he feels sad and then listen quietly if the
feels like talking.

¦
Try to put Tom’s grief in perspective. Tell him about the time you lost two
good friends in one year.

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